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There has been a somewhat wide ranging discussion over the past few days on the PPML site under a number of headers which started when a poster asked if there was a comparison in QOL (Quality of Life) outcomes between PBT (Proton Beam Therapy) and RALP (Robotic Assisted Laparoscopic Surgery). There is no such comparison and a number of posters reject PBT on those grounds.
I have always failed to be impressed by any argument against any specific form of treatment (or even non-treatment) purely in the grounds that there are no conclusive well-controlled or randomized studies that demonstrate the outcomes, whether we are talking about long term survival or side effects. My reason for this is a simple one – there are, to the best of my knowledge, NO conclusive well-controlled or randomized studies that provide these comparisons for ANY of the treatments (or non-treatments). To reject one form of therapy on these grounds ALONE, seems to me to be illogical and better grounds for rejection need to be developed to be convincing.
Dr Gerry Chodak made the point during the discussion that there are studies on quality of life issues. It seems that these are not randomized prospective studies but retrospective studies. If that is the case, then their value is diminished – many people reject such studies as being likely to be biased. This is often especially true if such studies do not support their point of view. There is, perhaps more acceptance when retrospective studies confirm their views.
Mike Scott said that he is aware of only one randomized study that compares QOL (Quality Of Life) outcomes I am inclined to believe him because his depth of knowledge is immense, so it is of interest to see his summary of the study to which he refers at “Quality of Life and Satisfaction with Outcomes” where he concludes:
The data provided in this study do not in any way offer the newly diagnosed patient the sort of perfect information that he can used to decide exactly which form of treatment is liable to give him, as an individual, the very best outcome after treatmen......All that the data from this study can do is offer you some general guidance about what is reasonably expectable on average. The data are what they are. We wish better guidance could be offered, but it just isn’t available.
So, if there are no conclusive well-controlled or randomized studies, How is a man facing a life changing decisions to gain any insight into potential outcomes? Is there any value in comparing the outcomes of men who have had treatment by way of anecdotal evidence? Does this offer ‘some general guidance about what is reasonably expectable on average.’?
NO, say many people, including one long time prostate cancer man (who does not post on this site but whose views are clearly set out on a number of others) – whose theme is Do not rely upon anecdotes from other patients, no matter how interesting.
Dr Chodak says, and I wouldn’t argue with him, ..... reading isolated stories can be very biased.
Yet, I have little doubt that Dr Chodak would agree that there is a value in support groups. Certainly the unnamed PCa man I mentioned above does as he says Personal contact with other patients can be very helpful. and we see the Deputy Chairman of Prostate Cancer Institute of Australia saying at a conference:
The encouragement we give to individuals who are diagnosed with prostate cancer is to talk with other patients that have been through the same process...... because the more involved their patients are and the more they talk to others with experience, they better off they are.
What do these men talk about when they meet, if not the outcome of their choices? Can these be biased – yes they can. Is there any value in these exchanges – in my opinion there certainly is. Fore warned is fore armed – our greatest fears are those where we have little knowledge.
But at the end of the day, no matter what conclusion a man comes to, based on what he has learned, whether this is from anecdotal evidence – the stories of his predecessors – or from studies no matter if they are regarded as flawed, he still has to find a qualified medical doctor to carry out the procedure he has chosen. There are no do-it-yourself prostatectomy kits; you can’t go down to Wal-Mart and buy a set of Brachytherapy needles; you can’t set up a proton beam radiation machine in your back yard. The final decision should be made based on the detailed analysis of the man’s disease and the most appropriate treatment prescribed. As Dr Strum says tirelessly “ASSESS STATUS BEFORE DETERMINING STRATEGY” . From all I have learned, in most cases diagnosed today, the strategies and the outcomes of all available options are likely to be indistinguishable from each other.
Aloha,
Terry has covered this subject, better than what I've read to date. Prostate cancer can't be compared to broken bones, colds, etc. When you jump to quality of life after PCa diagnosis, treated or not, we enter the biggest unknown that ever existed.
The pain scale usually is a question of how you rate your pain, 1 to 10 being the worst. In recovery after an operation, I listen to the guy next to me (behind closed curtains) complain about his pain. He insisted that it was a 13. When they asked me, I was hurting, but I had not passed out yet, so I said 8 as I curled up clutching my wife's hand. What I'm trying to say here is that each of us has an interpretation/perception of reality as to what is happening to us. How far from reality our thinking really is, is clearly seen in shows like "So you think you can dance, sing, etc...?"
With PCa you can say, starting with these particular conditions, here is the bell curve showing the results (quality of life) for 100% of the men. And if you look closely you might find yourself in that last 98%.
I've been communicating with a fellow, who no mater what I say continues to think/feel that if I would have had proton beam therapy, my out come would have been better. From what little info he has shared, he could easily be a PBT salesman or marketing manager.
Joe
There is one other study that is worth looking at on this topic, which is a relatively recently published, prospective, community-based study by Malcolm et al. For the details, please click here.
I thought I might rant a bit about flawed medical studies. The flaw in this study is that the full effect of radiation treatment is not usually felt for 3 to 5 years so to do a study with an end point at 3 years doesn't seem to make sense.
Another one is the usefulness of the PSA testing studies. It usually takes about 12 years (but not always) before you die of prostate cancer so announcing that PSA testing has no benneficial effect after doing a ten year study wouldn't make sense.
Another is the circular logic found in some papers on the rate of PSA rise and how long before biochemical recurrence will occur.
I always wonder who is doing the peer review of some of these papers. You always have to read medical research papers with a grain of salt....I guess that is why my doctors always appear to roll their eyes when I start quoting the latest research paper.
